What do you think about self-diagnosis versus doctor approved diagnosis?

[Nitro]

True, but people don't self-diagnose themselves with cancer: the act of self-diagnosis doesn't bring the condition into being if it was never there in the first place. And that's the question, isn't it? Well, for me it is. How many people who self-diagnose really do have autism? At the clinic I got my diagnosis from, I was told that about half of the people get an autism diagnosis; the other half, obviously, don't.

In short, I don't believe that self-diagnosis is virtually as accurate as official diagnosis. I don't know where this unspoken assumption that people can never be wrong about themselves arose from, but it's false. People are wrong about themselves all the time. I'm too sleep-deprived and braindead to go into much more detail than this right now.

Some,but not all of us are probably capable of doing our own research work,possibly beyond what academia requires of a person to hold a sheepskin,so I see no reason that I am not capable of learning about myself.
There are probably some who self-diagnose who I would question,but many of us were right in our original discovery of ourselves.

The same reasoning can apply to a professional decision,they after all are human as well
The diagnostics still are based on an opinion and nothing more,so who can you trust?

 

[Judge]

Indeed.

As long as the diagnostic process itself remains an "inexact science" on a professional level it's all one big moot point.

But for those who would deliberately try to fake this...they have bigger problems, IMO.

 

[Mia]

But for those who would deliberately try to fake this...they have bigger problems, IMO.

That's the question Judge, who would do such a thing? I think you have to consider intent. In Canada there is no provision for disability unless its a severe physical or mental disorder, that prevents you as an adult from functioning. Only severely disabled children and adults have this provision, and its a tax credit, not a lifetime disability pension. No such thing exists here. So, why would someone fake having ASD or autism in general?

I've not met anyone who 'pretends' to have autism, not only would it be a difficult thing to do, it would serve no real purpose in my country.

 

[Tom]

I think they are about as accurate as doctors as far as chances of being correct, and a lot cheaper. But it carrys no weight officially/legally.

 

[NiceCupOfTea]

Some,but not all of us are probably capable of doing our own research work,possibly beyond what academia requires of a person to hold a sheepskin,so I see no reason that I am not capable of learning about myself.
There are probably some who self-diagnose who I would question,but many of us were right in our original discovery of ourselves.

The same reasoning can apply to a professional decision,they after all are human as well
The diagnostics still are based on an opinion and nothing more,so who can you trust?

There are two important differences between the opinion of an appropriately trained professional and your own opinion.

1). The appropriately trained professional should see people with autism, or suspected autism, as part of their job every day. I don't know one other person with autism in real life apart from probably my dad, and I didn't suspect anything about him until I received my own diagnosis. The trained professional by comparison has assessed many people with autism and thus has far more experience across a wider range of the autistic population than I do. I only have myself to compare myself to, whereas the professional will have hundreds of comparisons.

2). The appropriately trained professional will be objective or at least a hell of a lot more objective than you. The online aspie quizzes are riddled with ambiguous questions that can have multiple interpretations. But even if they weren't, it is literally impossible for any human being to view themselves with 100% objectivity: pre-existing beliefs, prejudices, personality traits, etc. will always get in the way.

 

[NiceCupOfTea]

Indeed.

As long as the diagnostic process itself remains an "inexact science" on a professional level it's all one big moot point.

But for those who would deliberately try to fake this...they have bigger problems, IMO.

It's not a question of deliberate fakery. Very, very people deliberately fake having a physical illness; the ones who do are usually Munchausen syndrome sufferers. There are, however, many thousands of people who sincerely believe that they are ill. They go to their doctors, they get tests done, they continue to worry about having a fatal disease despite the results coming back clear. They absolutely aren't faking it in the sense of 'putting on' the symptoms. They are simply blowing existing symptoms, or even normal bodily sensations, completely out of proportion. Their anxiety won't let them get a grip.

I suspect something similar is going on with Asperger's and neurodiversity in general. People who claim to have Asperger's, bipolar, ADHD, or whatever, aren't faking it. To the contrary, they are usually terribly sincere and certainly not consciously trying to fool anybody.

 

[On the Inside]

I suspect something similar is going on with Asperger's and neurodiversity in general. People who claim to have Asperger's, bipolar, ADHD, or whatever, aren't faking it. To the contrary, they are usually terribly sincere and certainly not consciously trying to fool anybody.

I agree. When someone is in the throes of suffering, having a reason behind it is like a life raft, something to help understand the root of the problem. However, as you said in your other post, it is hard to be truly objective with yourself, especially if you are losing your grip.

Years ago, I "self diagnosed" as being quiet, uncomfortable in social situations, bad at writing, impatient, a chronic procrastinator, obsessive about my interests, not interested at all in things most people consider important, etc. These were observable, repeated behaviors but not indicative of an underlying condition, at least to me. If I was faking anything, it was that everything was fine. Five or six years ago, I was losing my grip and all of those things were swirling together into one big ball of a mess and I sought help which eventually led to being diagnosed.

My third therapist suggested Aspergers at the end of our first session, but I wanted a second opinion, and verification because what if it was something else? I definitely wanted to know, and I want solid evidence.

One of the things that my formal assessment brought to light were the areas where I have holes and weaknesses in my thought process and perception that I was oblivious to. Knowing that I have these weaknesses explains a lot of my difficulties and shortcomings, why my life has unfolded as it has. I can forgive myself and my past foibles, and work to mitigate those in the future.

 

[NiceCupOfTea]

On the Inside - When I was younger, I 'self-diagnosed' as a depressed introvert, who was also shy, boring, apathetic, sad, lonely, etc. Weirdly enough, the possibility of Asperger's came up when I was in my late teens. But I never saw a professional about it and I wasn't to pursue it for another 20 years. I did see counsellors and psychiatrists in the meantime: none of them suggested Asperger's to me, even though there were sessions when I would have near total shutdowns. I myself didn't mention it to anyone until nearly two years ago. Most people would probably have said "Hmm, that's interesting, why do you think that?" and then promptly dropped it, but the woman I told took it seriously and told me that a new adult autism service had opened up near me. Talk about chance.

I'm working on trying to forgive myself for my past foibles, but when you've screwed up as much as I have, it's hard :-/

 

[Bruce Stern]

Let me give my perspective as a doctor who's currently self-diagnosed but seeing an MD specializing in ASD in a few weeks.

I've had my concerns airily brushed off by two therapists without actually ruling out the diagnosis. It'd be like myself attributing memory loss to "old age" without doing the testing to rule out Alzheimer's, Parkinson's or vascular (stroke-related) dementia. I accepted their premature conclusions, a hearty "you're fine!" and discharge after a few sessions. I did what I now consider myself a disservice and didn't look into it further until now.

Part of it was my fault. There were so many things I chalked up to eccentricities or was so familiar with them I thought everyone did them. So I never mentioned them. The unrealistic nature of the therapeutic mileu glossed over some problems. The therapist office is a nice, low stim area and without a lot of distractions it's difficult to imagine the same person in the workplace. If you talk for 1/2 hour straight about yourself in therapy you're a good client. If you do it regularly with people you won't have friends.

It felt awesome to finally look for myself and get an in depth read on ASD. I found Gaus' book 'Cognitive Behavioral Therapy for Adult Asperger Disorder' extremely helpful as a professional because she includes a nice overview of other diagnosis to consider (the differential diagnosis or why ASD may or not fit). She also discusses other mental conditions that may occur with this disorder. Last, there was a nice "what families report" section that I shared with my partner of 8 years (http://psychcentral.com/lib/book-review-cognitive-behavioral-therapy-for-adult-asperger-syndrome/). Reading this book was a huge revelation and explained a lifetime of inexplicable social interactions that were by turns baffling, negative and painful.

Later I did the screening tests. I don't know how valid they are but I look them as one more piece of data to consider (ND score of 163 with NT of 62).

I get a twinge when patients self-diagnose but also sometimes what they've discovered is definitely worth investigating. Many times they're right. OTOH I'll have others dismiss major pieces that aren't fitting. In most cases if you're not hitting a majority of diagnostic criteria its something else.

I'll confess I've gone beyond self-diagnosis. The books I'm reading on social skills/dialogue are like learning a new language (I speak three and it's harder than Thai). Worst case scenario I'm learning social skills/dialogue and patterns of behavior that have sabotaged my career. If there's another diagnosis it'd have to be more compelling and encompassing to one that describes almost everything that I've been dealing with since adolescence.

 

[XAND]

I remain self-diagnosed, but not for want of trying. My experience in seeking a formal diagnosis has been soul-crushing. I feel very strongly that the formality of professional corroboration would help me; I really need to have some validation. Other than a few helpful comments received here on AC and the continued support of my wife, I feel profoundly—painfully—alone in this struggle.

My extended family has questioned my need for a formal diagnosis, going as far as implying the diagnosis itself would render me handicapped—as if the existing lifelong struggle has been meaningless, but attaching a label to it would instantly queue me up for a state-sponsored death squad. (To their credit, they have been more understanding recently).

It is difficult to explain my motive to NTs, except that my obsession with ordering and characterization may really be a hallmark of ASD in the first place. But the validity is important to me.

I can see by some of the responses here that not having a formal diagnosis would make my status suspect even to some aspies, making me an outsider in the NT world and possibly among you as well.

It's a matter of resources as well: without a diagnosis, I have no official support. It brings tears to my eyes to imagine just being able to talk with someone in a therapy setting, or to have a sense of belonging, well... anywhere. I envy that of many of you here.

 

[On the Inside]

I remain self-diagnosed, but not for want of trying. My experience in seeking a formal diagnosis has been soul-crushing. I feel very strongly that the formality of professional corroboration would help me; I really need to have some validation. Other than a few helpful comments received here on AC and the continued support of my wife, I feel profoundly—painfully—alone in this struggle.

My extended family has questioned my need for a formal diagnosis, going as far as implying the diagnosis itself would render me handicapped—as if the existing lifelong struggle has been meaningless, but attaching a label to it would instantly queue me up for a state-sponsored death squad. (To their credit, they have been more understanding recently).

It is difficult to explain my motive to NTs, except that my obsession with ordering and characterization may really be a hallmark of ASD in the first place. But the validity is important to me.

I can see by some of the responses here that not having a formal diagnosis would make my status suspect even to some aspies, making me an outsider in the NT world and possibly among you as well.

It's a matter of resources as well: without a diagnosis, I have no official support. It brings tears to my eyes to imagine just being able to talk with someone in a therapy setting, or to have a sense of belonging, well... anywhere. I envy that of many of you here.

It is troubling that you have had such difficulty with treating your problems, but take heart, we are all outsiders here. I hope you get the help you desire.

 

[Nitro]

There are two important differences between the opinion of an appropriately trained professional and your own opinion.

1). The appropriately trained professional should see people with autism, or suspected autism, as part of their job every day. I don't know one other person with autism in real life apart from probably my dad, and I didn't suspect anything about him until I received my own diagnosis. The trained professional by comparison has assessed many people with autism and thus has far more experience across a wider range of the autistic population than I do. I only have myself to compare myself to, whereas the professional will have hundreds of comparisons.

2). The appropriately trained professional will be objective or at least a hell of a lot more objective than you. The online aspie quizzes are riddled with ambiguous questions that can have multiple interpretations. But even if they weren't, it is literally impossible for any human being to view themselves with 100% objectivity: pre-existing beliefs, prejudices, personality traits, etc. will always get in the way.

Show me the prerequisites for a true autism professional and possibly I will see it your way.
From what I understand,all it takes is a masters degree in psychology and a state board approval to hang a shingle in the USA. In my honest opinion,psychology is a black art,not a science.

To address the other statements about my mental condition at the time,I wasn't struggling with autism and only found answers to what exactly made me different. I had nothing to gain from my diagnosis.

If you actually need total validation for support,then by all means seek professional help.

 

[Mia]

So let me get this straight, the only valid opinion/diagnosis has to come from the medical profession? Otherwise it can't be true, is that correct? I don't need someone other than myself and research and books and articles to tell me that I have ASD, I already know after a lifetime. It's fine if you 'need' an actual diagnosis, to verify something about yourself, that you don't understand. That is your prerogative, don't marginalize people who don't think the way you do.

 

[Ste11aeres]

1). The appropriately trained professional should see people with autism, or suspected autism, as part of their job every day. I don't know one other person with autism in real life apart from probably my dad, and I didn't suspect anything about him until I received my own diagnosis. The trained professional by comparison has assessed many people with autism and thus has far more experience across a wider range of the autistic population than I do. I only have myself to compare myself to, whereas the professional will have hundreds of comparisons.

If it's someone like Tony Attwood, then yes, that will be the case. But many other professionals do not see people with autism or suspected autism very frequently. It really depends on who is the professional we're referring to.
BTW, I know and have known a fair number of people in real life with ASD.

 

[Judge]

It's not a question of deliberate fakery. Very, very people deliberately fake having a physical illness; the ones who do are usually Munchausen syndrome sufferers. There are, however, many thousands of people who sincerely believe that they are ill. They go to their doctors, they get tests done, they continue to worry about having a fatal disease despite the results coming back clear. They absolutely aren't faking it in the sense of 'putting on' the symptoms. They are simply blowing existing symptoms, or even normal bodily sensations, completely out of proportion. Their anxiety won't let them get a grip.

I suspect something similar is going on with Asperger's and neurodiversity in general. People who claim to have Asperger's, bipolar, ADHD, or whatever, aren't faking it. To the contrary, they are usually terribly sincere and certainly not consciously trying to fool anybody.

No, you misunderstand the context of what I was referring to. I meant those who deliberately pretend to be on the spectrum almost as a fashion statement. A deliberate social gimmick probably to draw attention. Probably not a significant number of people. I've only heard of them- can't say I've ever run into any of them. Frankly I don't know any Aspies who would actively seek to draw attention to themselves to start with.

But I wasn't talking about people who are working the problem...whatever the actual outcome might be. Those who for whatever reason imagine they might be on the spectrum. I don't consider that to be "faking" anything. Which could include myself, presently self-diagnosed.

However those who would deliberately fake this along the lines I mention above, I find bizarre....disturbing. It's no cakewalk to go through life not knowing why people do or don't relate to you socially.

I do hear people occasionally abuse the term OCD quite a bit though...which bothers me as well.

 

[zurb]

How many people who self-diagnose really do have autism? At the clinic I got my diagnosis from, I was told that about half of the people get an autism diagnosis; the other half, obviously, don't.

Which means that 50%, in the clinician's view (and we know nothing of their competence), don't require assistance (or got a different diagnosis). It doesn't mean they aren't on the spectrum. They just haven't passed the threshold considered clinically significant.

There are many here who benefit from the forum, but may be considered to have mild to borderline Aspergers (or even just have 'Asperger like tendencies' - don't get me started on what this really means). They might struggle to get diagnosed as an Autistic, but their struggles with life are still very real.

My understanding is AC has always been welcoming of these folks and NTs. Long may it continue. (I have some concerns about migration from other forums which don't share the same ethos).

 

[AsheSkyler]

There are many here who benefit from the forum, but may be considered to have mild to borderline Aspergers (or even just have 'Asperger like tendencies' - don't get me started on what this really means). They might struggle to get diagnosed as an Autistic, but their struggles with life are still very real.

I grew up hearing "you might have a touch of autism" from a woman trained in psychology.

 

[Datura]

As others have mentioned; it is very difficult to be objective about ones self. I have started threads expressing this very anxiety. Professionals may be prone to subjective bias themselves, but (generally speaking) I would give their coroberation more creedence than your average self diagnosis. They are, after all, more removed from the situation. They have no stake one way or the other. Even so, their authority is not absolute.

As somebody who is questioning I tend to seek out people who are diagnosed, largely for the sake of comparison. When somebody identifies as self diagnosed I don't stop listening to them - they may still have valuable perspectives - but I am less apt to use them as a metric.

I sometimes fear that the presense of self diagnosed individuals on sites like this might dilute "the aspie experience", bluring the line between autistic and alistic experience and leading to more eronious self diagnoses. This could cause further confusion as to what autism is, warping the conversation surrounding it and leading to the further marginalization of people who actually do have the condition. As such, I have never felt comfortable self diagnosing, though this might be different if my symptoms were more clear-cut.

 

[zurb]

I'm not sure about where you are from, but here Doctors do have a stake, especially when there is political/financial reasons/agreements to under diagnose. If I'm not a five year old with significant behavioural issues that get me suspended from school what am I supposed to do? For some self diagnosis is the only option.

Concerns about 'dilution' would also have to apply to having NTs here. Not sure about on the website, but in the iPhone app there is no indication of anyone's status.

 

[NiceCupOfTea]

Look guys, I don't care whether you have Asperger's, mild Asperger's, PDD-NOS, BAP, or nothing at all (i.e. you are NT). I'm happy for all sorts to post here: I'm not trying to turn this forum into some kind of Aspergian ubermensch club. But self-diagnosis is a very different kettle of fish to thinking that maybe you are on the spectrum or that you would quite like to hang out with some aspies today. I do feel bad for those who want to have an official diagnosis, but cannot afford an assessment or find a suitable psychiatrist in their area, although my impression is that most of the self-diagnosed don't actually fall into that category. Instead they are more likely to say things like, "well, I don't need an official diagnosis to tell me what I already know about myself", and so on. It's the people who have doubts who are most likely to want to have a proper assessment.

Not that anybody cares, but I'll tell you what I would have done if I hadn't received a diagnosis on 2nd July, 2014. Nothing. Nothing at all. I'd have been disappointed, but in the long run I don't think it would have changed much - after all I had muddled along for 39 years already. And, let's face it, even with an official diagnosis, I'm hardly a golden star of the online aspie community. So far, I wouldn't be missing a lot if I had never joined this community, no offense to anyone intended.

Which means that 50%, in the clinician's view (and we know nothing of their competence), don't require assistance (or got a different diagnosis). It doesn't mean they aren't on the spectrum. They just haven't passed the threshold considered clinically significant.

No, it means they aren't on the spectrum (in the clinician's opinion). I was told by the guy who did my pre-assessment that sometimes a positive diagnosis is given in borderline cases, but the clinician will make a note of this in their assessment report. I was apparently a 'clear' case. You are free to doubt my clinician's competence if you wish, just as I'm free to doubt your competence to diagnose yourself.

I'm not sure about where you are from, but here Doctors do have a stake, especially when there is political/financial reasons/agreements to under diagnose.

Pretty sure this is a myth, like driving examiners' quotas.

Show me the prerequisites for a true autism professional and possibly I will see it your way.
From what I understand,all it takes is a masters degree in psychology and a state board approval to hang a shingle in the USA. In my honest opinion,psychology is a black art,not a science.

Mate, I already did: objectivity and clinical experience.

Much as I'd love to stay and chew the chaff some more, I'm sadly in a rush again. I've almost left it too late to have a cup of tea - almost, but I'm not leaving this flat until I have one :-/